Presumptuous Consent

Many more sick people need kidneys, hearts, and livers than there are kidneys, hearts, and livers to go around. This shortage is the result of both decreased supply and increased demand. For example, public safety laws requiring that motorists wear seat belts and motorcyclists helmets have reduced the kind of catastrophic head injuries that often lead to organ donation. At the same time, the capacities of transplant medicine have advanced exponentially, allowing more people to benefit from a transplant than ever before. The toll taken by the resulting shortage is measured in the number of patients who die while waiting in line for an organ to become available.

The transplant community is pushing to increase the number of people signing donor cards. But the acute organ shortage has also tempted some to seek a weakening of the strict ethical rules that have for decades successfully maintained the public’s broad—if shallow—trust in organ transplant medicine.

Broadly stated, these rules prevent patients—no matter how sick or catastrophically disabled—from ever being treated as a mere organ system rather than an equal member of the moral community. This is accomplished through adherence to two legally enforceable principles:

Donors of vital organs must be clinically dead before procurement, a requirement known as the “dead donor rule;” and

Organs will be taken only if consent is freely given—either by the patient via signed organ donor cards or by family members. Indeed, informed and freely given consent is currently recognized as being so symbiotically bound with the public’s trust in the transplant system that organs are almost never procured without obtaining explicit familial consent even when a donor card is on file.

Many current proposals to alleviate the organ shortage would devastate the viability of both protections. For example, papers published in some of the most world’s most notable medical and bioethics journals—the New England Journal of Medicine, Lancet, Critical Care Medicine, among others—have urged eliminating the dead donor rule. One often advocated approach is to “redefine death” to include the diagnosis of persistent vegetative state, based on the noxious notion that a patient who has irreversibly lost conscious awareness ceases to be a “person.” Hence, even though such people are obviously alive, advocates argue that their loss of perceivable awareness make life and death in these cases a distinction without a meaningful difference.

Still, despite the growing advocacy for eliminating the dead donor rule, ethicists understand that killing clearly living patients for their organs would decimate public trust in transplant medicine. Thus, while these proposals must be resisted vigorously every time they are made, it is unlikely that any will be adopted.

Alas, the same can’t be said for the continued vitality of the second principle. Indeed, legislation (A-9865) just introduced by New York Assemblyman Richard Brodsky would turn the current approach for obtaining consent inside-out. Brodksy’s bill would require every applicant for a New York driver’s license to expressly opt out as an organ donor, rather than, as is currently the case, expressly opt in. The proposal states: “If the applicant does not decline to be registered in the New York State Organ and Tissue Donor Registry they will be automatically enrolled.” In other words, unless you explicitly refuse to be a potential donor—you are one.

“Presumed consent,” as this approach is known, is already the law in several countries, and studies are mixed as to whether they meaningfully increase the organ supply. But even if such laws have added to the number of transplantable organs in countries like Spain and France, as seems to be the case, we are not (yet) Europe. We value individualism over collectivism, autonomous decision making over the imposed “greater good.” Indeed, presumed consent laws could unleash a boomerang effect: Many would resent the new approach as government coercion over one of the most intimate decisions anyone can make and protest by taking the opt out option.

The current societal context must also be considered. The Obamacare debate, with its specter of “death panel” rationing boards and waiting lines, significantly undermined the people’s faith in our medical system. Now, factor in presumed consent to the popular fears that expensively ill and injured patients will soon be discarded as so much medical waste. Finally, mix in already existing medical futility policies—such as in Texas—which permit hospital ethics committees meeting behind closed doors to refuse wanted life-sustaining treatment based “quality of life” or the cost of their care—and you have a perfect prescription for distrust in all things medical. In such a milieu, the temptation to believe that your catastrophically head-injured son could have been saved, but died because his organs were deemed more valuable than his life, would be, for some, hard to resist.

Finally, there is the issue of integrity. We have become a public policy promise breaking nation. Think of the many times solemn assurances have been given that reasonable restrictions will be maintained in order to gain popular acceptance of controversial policies—and how casually they were cast aside once the deal was sealed. Remember when IVF was going to be limited to infertile married couples? Now “Octomom”—a fertile, single woman—has fourteen children conceived by IVF and has become a cover model for celebrity magazines.

We can’t permit a similar pattern to swamp the ethics of organ transplant medicine. A bad idea—even when envisioned for altruistic reasons—is still a bad idea. Presumed consent has no place in American medicine or public health policy.